Trump seeks funding for data resource to support pediatric cancer research

The Trump administration wants to launch a 10-year, $500 million initiative that creates a national data resource for pediatric cancer research to develop new, more effective and safer treatments for children.

President Trump first announced the data initiative in February in his 2019 State of the Union Address, making the case that “many childhood cancers have not seen new therapies in decades.”

Last month, the Department of Health and Human Services released its proposed Fiscal Year 2020 budget request, which includes $50 million in funding for the National Cancer Institute (NCI) to launch the effort.

According to HHS officials, the goal of the NCI initiative is to facilitate the aggregation of data to establish a “federated, comprehensive and shared resource” to support childhood cancer research that accelerates and expands drug discoveries and clinical trials.

“Through this initiative, NCI will aggregate data from pediatric cancer cases and coordinate with others that maintain datasets to create a comprehensive, shared resource to support childhood cancer in all its forms,” states an HHS budget justification document. “This knowledge, spanning from basic biology to clinical outcomes, provides a path to change the course of cancer in all children.”

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Also See: St. Jude launches largest public repository of pediatric cancer genomics data

“Pediatric cancer has been neglected for a long time,” HHS Secretary Alex Azar told a Senate subcommittee on Thursday. “I hope we’ll get a greater focus there.”

In testimony this week before a House subcommittee, National Institutes of Health Director Francis Collins, MD, pointed out that cancer is the leading cause of death from disease among children and adolescents in the United States.

“Although substantial progress has been made in the treatment of several types of childhood cancer, progress against other types has been limited,” according to Collins. “Even when long-term survival is achieved, many survivors of childhood cancer may experience long-term adverse effects from the disease or its treatment.”

Last week, HHS Deputy Secretary Eric Hargan told a congressional hearing that the “fragmentation and siloing” of data in pediatric cancer research has been an ongoing problem that has impeded progress in finding cures.

“We often find that researchers don’t talk to each other within this area and don’t share data collaboratively,” testified Hargan. “Being able to gather information on the data, get it together into a single place and determine where we’re seeing better results within pediatric cancer is central to solving the problem.”

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